Living with Moderately to Severely Active Ulcerative Colitis – Nour's Story

May 7, 2024 Posted by: Eli Lilly and Company

Gastroenterology Immunology Patient Story Caring

The unpredictability of living with a chronic illness can make activities seem challenging and limit spontaneity. In the heart of these challenges, we find Nour, a resilient individual who has been shaped by the struggles and triumphs of managing ulcerative colitis (UC), an inflammatory bowel disease (IBD) that affects the colon of the gastrointestinal tract. Learn about Nour’s journey after being diagnosed at 21 years old as she shares the impact UC has had on her life and her work to connect with others living with this disease.

Q: How did you feel when you first noticed symptoms and received your diagnosis?

Nour: When I first started to experience symptoms, I wasn’t sure what it was. After some intensive blood work and a colonoscopy, I was officially given a diagnosis of moderately to severely active ulcerative colitis. It did take me by shock. I wasn’t really sure how to move forward from there. It was hard for me to accept that this was something I didn’t have any control over.

Q: What were your most disruptive symptoms?

Nour: Some of the most disruptive symptoms for me include going to the bathroom frequently, bowel urgency and rectal bleeding. It can trigger at any time. On days when I’m having an active flare, something as simple as a sip of water can suddenly spark the need to find a restroom ASAP. That unpredictability can take a toll.

Q: How has bowel urgency affected your life?

Nour: One of the symptoms of ulcerative colitis, bowel urgency, really affected my life in terms of how I can get through my day-to-day activities and how many of these activities I can reasonably do.

It took away a little bit of the spontaneity of life, and I felt like I couldn't experience that anymore and had to go with the whims of my body. And at first, it was really hard to accept that. It got me into this position where I felt like I wasn't really having a lot of fun.

Q: Was there a turning point for you on your disease journey?

Nour: When I was first diagnosed with moderately to severely active ulcerative colitis, I really wasn't sure what the disease outlook would be. I wasn't really able to focus that well in my classes. I wasn't able to be involved with as many extracurricular activities as I would've liked, and I realized I had to cut down and compromise on a lot of things I used to enjoy.

My sister, who was also diagnosed around the same time, has always been an old soul, and she would say things that are very beyond her age. She would always say, "You have good days and bad days, and learning how to work through the bad days is what's important." And it took me some time to understand what that really meant.

Q: You’ve talked a lot about the impact of UC. Could you elaborate on that?

Nour: In my early diagnosis stage, I was focused on feeling better physically and just trying to move past that. But as the years went by, and I kept getting switched from one medication to another, and my symptoms being on and off, I didn't realize just how much of my physical symptoms were starting to affect me. Sometimes it just sneaks up on you, and you don't realize how much of it has affected you. And at one point, I had to make a decision if I was going to let this disease control me or if I was going to do something about it first.

In my early journey with ulcerative colitis, I didn't really seek any outside support. So, six or seven years into my diagnosis, I decided to take that step. It's been incredibly life-changing, and I think it's really helped me come to terms in understanding living with a chronic illness, how to anticipate the future and really learning to live day by day and trying to figure out how to prevent a disease from taking over your life.

Q: Can you tell us about an experience living with active ulcerative colitis or a flareup?

Nour: That's a good question. I recall a time where I had a good friend who was getting married, and I really wanted to attend her wedding. I knew I wasn't feeling well physically to be able to attend and with my symptoms and the number of guests that she would be having, I knew it wouldn't be practical for me to attend.

I recall another time I had set to arrange to take the MCAT, but I hadn't received accommodations in time and unfortunately, had to cancel my exam. I didn't feel like I was in a position where I could sit for that long and not be able to take the necessary breaks I would need if I had to use the restroom. I felt like I wouldn't perform as well on the exam if I didn't have those accommodations.

Q: How has ulcerative colitis changed your perspective of your own future?

Nour: Ulcerative colitis has definitely changed my perception of my future. I really couldn't imagine what my life would look like one year or two years, three years down the line, and that to me was very challenging.

It's scary to think about what could be down the road and all these what-ifs; they could impact you in a way that really takes you away from just experiencing life. And I think after some point, you realize that if you're doing all you can to manage your disease, you have to trust in the process and just enjoy living day to day.

Q: What motivates you to keep sharing your own story?

Nour: My biggest motivation to sharing my story is to be able to reach and impact as many people living with ulcerative colitis as I can. I think it's really important to keep talking about this. Even if you just reach one person, then I feel like we've made a huge difference. And if all it takes is reaching that one person, I think that's very powerful.

0:00—0:03

[Music begins, Lilly logo appears on screen]

0:04—0:08

[Logo fades away and is replaced by a city scene. Cars and buses wait in traffic at a busy intersection and a train is seen passing by. Siren noises can be heard in the background]

Nour: Chronic illness is a taboo.

Caption: Patient was compensated for her time.

0:09—0:11

[Nour walks down the street, looking out at the city and buildings]

Nour: I’m in the process of applying to medical school

Caption: Patient was compensated for her time.

0:12—0:16

[Nour continues walking with her back facing the camera and turns to look into the distance]

Nour: and I really want to change how people view digestive diseases.

On-Screen Super: “I really want to change how people view digestive diseases.”

0:17—0:24

[Close up of Nour smiling fades to Nour sitting in a chair in front of a backdrop]

Nour: My name is Nour and I was diagnosed with moderately to severely active ulcerative colitis.

0:25—0:28

[Nour enters the doors of a hotel with a suitcase]

Nour: I’m traveling today to participate at a conference.

0:29—0:33

[Nour places her suitcase on the bed and opens it]

Nour: It’s going to be a great opportunity to have that conversation on what it’s like living with UC.

0:34—0:43

[Nour looks out the hotel window at the city]

Nour: It’s an autoimmune disease that affects the digestive system. When I first started to experience symptoms, I wasn’t sure what it was.

0:44—0:48

[Scene transitions to Nour in the chair, then pans to her walking down a busy street]

Nour: It progressively got worse, and that’s when my doctor advised me to see a gastroenterologist.

0:49—0:55

[Nour stands at a bridge railing looking out into the distance and frame changes to her sitting in the chair]

Nour: After some intensive blood work and a colonoscopy, I was officially given a diagnosis of ulcerative colitis.

0:56—1:06

[Frame flips between Nour walking down the street and sitting in the chair as she continues to tell her story]

Nour: It did take me by shock. I wasn’t really sure how to move forward from there. It was hard for me to accept that this was like something I did not have any control over.

1:07—1:13

[Nour sits in the chair in front of a backdrop]

Nour: Some of the most disruptive symptoms include going to the bathroom frequently, bowel urgency and rectal bleeding.

1:14—1:24

[Nour stands at a bridge railing looking out at the water and holding a drink in her hand]

Nour: It can trigger any time, and when I’m having an active flare out somewhere and I just have a sip of water and then suddenly I need to find a restroom ASAP.

1:25—1:28

[Close up of Nour looking into the distance]

Nour: That unpredictability can take a toll on you.

On-Screen Super: “That unpredictability can take a toll on you.”

1:29—1:33

[Frame switches to a bridge with city buildings in the distance]

Nour: Once, I had set to take the MCAT, but I hadn’t received accommodations on time.

1:34—1:44

[Nour sits in the chair then frame transitions to Nour entering a car]

Nour: I didn’t feel like I was in a position where, you know, I could sit for that long and not be able to take the necessary breaks. I really didn’t know what my body had planned for me that day.

1:45—1:53

[Nour sits in the chair in front of a backdrop and looks down at her hands]

Nour: It felt like I wouldn’t perform as well and unfortunately had to cancel my exam. It was very frustrating for me to kind of experience that.

1:54—1:55

[Nour rides in the car, looking out the window into the distance]

Nour: It does feel very isolating.

On-Screen Super: “It does feel very isolating.”

1:56—2:06

[Nour exits the car and enters a café]

Nour: My early journey with ulcerative colitis, I didn’t really seek any outside support. It’s not really a topic that’s discussed at all with Middle Easterns.

2:07—2:11

[Nour sits in front of a laptop as a waiter sets a drink on her table]

Nour: And as time went on, I realized how much my mental health was suffering.

2:12—2:23

[Nour receives a video call from her sister, Zehra. She answers the call and begins talking]

Nour: Interestingly, my sister was diagnosed around the same time as well, and she would always say, you know, you have good days and bad days and learning how to work through the bad days is what’s important.

2:24—2:27

[Nour sits in the chair in front of a backdrop and music begins to sound upbeat and hopeful]

Nour: That was a turning point for me.

2:28—2:34

[Nour smiles and frame transitions to a train passing overheard, then to Nour walking down a hallway in conversation with another person]

Nour: I realized that it’s okay to be able to reach out to other people to get a different perspective, to get different insight.

2:35—2:37

[Holding a microphone, the conference moderator introduces Nour]

Moderator: Please give a warm welcome to Nour.

2:38—2:44

[Nour enters the conference session smiling and hugs the moderator while the crowd applauds]

Nour: In some ways, I felt like I was learning how to cope with the disease as well by helping other patients.

2:45—2:55

[Nour speaks into the microphone as the audience nods]

Nour: Find your community, find that niche, find that space that you feel safe in because this is not something that you have to go through alone. That’s the only way we can kind of normalize chronic illness.

2:56—3:06

[Frame transitions between Nour sitting in the chair and the conference session, ending with applause from the audience]

Nour: Patients don’t really get a lot of exposure on how to manage diagnosis. My biggest motivation to sharing my story is to bridge that gap in healthcare.

3:07—3:10

[Nour is greeted enthusiastically by a group of people sitting around a table on a rooftop]

Nour: I think it’s really important to keep talking about this.

On-Screen Super: “It’s really important to keep talking about this.”

3:11—3:16

[Nour engages in conversation with the group sitting at the table]

Nour: We can help each other experiencing the same thing. That’s so incredibly powerful.

3:17—3:20

[A group of conference attendees introduce themselves to one another as frame transitions to a close-up of Nour standing at the rooftop railing smiling]

Nour: All it takes is reaching that one person to make a huge difference.

3:21—3:25

[Screen fades into red background with Lilly Logo]